An unexplored ethical issue in clinical research

Disclosure of individual findings in the Creando Posibilidades [creating possibilities] study

Karen Farchaus Stein, Colleen Keller, Astrid Fishstrom

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.

Original languageEnglish (US)
Pages (from-to)311-319
Number of pages9
JournalResearch in Nursing and Health
Volume36
Issue number3
DOIs
StatePublished - Jun 2013

Fingerprint

Disclosure
Ethics
Research
Health
Risk-Taking
Longitudinal Studies
Research Personnel
Guidelines

Keywords

  • College women
  • Disordered eating
  • Hispanic women
  • Research ethics
  • Risk behaviors
  • Self-schemas

ASJC Scopus subject areas

  • Nursing(all)

Cite this

An unexplored ethical issue in clinical research : Disclosure of individual findings in the Creando Posibilidades [creating possibilities] study. / Stein, Karen Farchaus; Keller, Colleen; Fishstrom, Astrid.

In: Research in Nursing and Health, Vol. 36, No. 3, 06.2013, p. 311-319.

Research output: Contribution to journalArticle

@article{3f61df4b33c6446ab96323eca39e479f,
title = "An unexplored ethical issue in clinical research: Disclosure of individual findings in the Creando Posibilidades [creating possibilities] study",
abstract = "Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.",
keywords = "College women, Disordered eating, Hispanic women, Research ethics, Risk behaviors, Self-schemas",
author = "Stein, {Karen Farchaus} and Colleen Keller and Astrid Fishstrom",
year = "2013",
month = "6",
doi = "10.1002/nur.21533",
language = "English (US)",
volume = "36",
pages = "311--319",
journal = "Research in nursing & health",
issn = "0160-6891",
publisher = "John Wiley and Sons Inc.",
number = "3",

}

TY - JOUR

T1 - An unexplored ethical issue in clinical research

T2 - Disclosure of individual findings in the Creando Posibilidades [creating possibilities] study

AU - Stein, Karen Farchaus

AU - Keller, Colleen

AU - Fishstrom, Astrid

PY - 2013/6

Y1 - 2013/6

N2 - Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.

AB - Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.

KW - College women

KW - Disordered eating

KW - Hispanic women

KW - Research ethics

KW - Risk behaviors

KW - Self-schemas

UR - http://www.scopus.com/inward/record.url?scp=84878207587&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84878207587&partnerID=8YFLogxK

U2 - 10.1002/nur.21533

DO - 10.1002/nur.21533

M3 - Article

VL - 36

SP - 311

EP - 319

JO - Research in nursing & health

JF - Research in nursing & health

SN - 0160-6891

IS - 3

ER -